Life on Oxygen

Hello, my name is Christine. I use oxygen 24/7 and I am now 54 years old. I didn’t always have to use oxygen. It all began when I was 17 years old. It was a monumental change in my life. Since I was just a teenager at the time, it hit me hard. I’m hoping with this blog that people who also use oxygen can see that life isn’t over just because you need oxygen. I think the hardest part for me was accepting that I’ll never live without it again. Once I jumped over that hurdle, life began to change. For the good.

So with this blog… and for all those who are interested in knowing how I live with oxygen needs, I’ll post what I know in hopes that it will help others. Spouses & families too! I am married and what I’ve gone through since I was 19 years old, he’s gone through too with me.

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[I update my age every year on this post]

Life Happens!

I finished Occupational & Physical Therapy back in December. Hooray! But, I still need to keep up with it at home which is easier said than done. So, I’m falling flat on that. Shame on me. Last couple of months I had a good excuse. I hurt my ankle somehow. Honestly, I have NO IDEA how it happened but I think the dogs were involved in the middle of the night. *sigh*

My doctor ordered my home health company to come out that night to do an x-ray of my ankle. It didn’t SHOW a break but it hurt! It hurt for 2 months. I’ve never broken a bone before and I want to keep that awesome streak alive! So, we’ll just say I sprained it. It’s feeling better now but it still aches every so often.

I’ve been using my Trilogy ventilator 24/7 for 14 months now. I’m doing well. I have good days and a few bad days mixed in. Today, I got my Trilogy swapped out with another Trilogy because it came with a modem that will send reports, from the machine, directly to my doctor who prescribed it. It runs on bluetooth. Isn’t technology great? Now, no one has to come to my house to pull a report from the Trilogy via USB and email it to my doctor. I’m usually seeing that doctor via Telehealth and only rarely do I need to show up in her office. I really like Telehealth doctor appointments. I also got a different mask to use and it’s making eating easier. I still have to use a straw to drink beverages though. I did buy a couple of straws that can be reused. One of them is steel and the other is hard plastic. I don’t use disposable ones because they would just end up in the landfill. Boo! But I do miss those flexi straws. =o)

It’s getting to be a pain to lug my trilogy and 2 oxygen portables every time I leave the house. It was funny (after the fact) when K and I were about to leave for an appointment, that we pretty much fumbled through getting me out the door. It is so crazy! I have switch my source of oxygen to use 2 portables with a splitter, change the Trilogy hose to a 6ft one (instead of a 10ft one) and then detach my Trilogy from the base to leave the house. K carries it all as we walk to our vehicle. The first time we did it, I knocked over my tumbler of ice water all over the floor because the hose caught onto it when K was lifting the machine. My dog, Willow, loved all the free ice that scattered all over the floor. We were in a rush. So, we grabbed whatever was close to mop it up. Never a dull moment. We are finally getting a routine down for when we have to go somewhere. YAY! K says that it looks like we actually know what we’re doing now. =o)

I’m pretty much a homebody though. I honestly look forward to days where K gets me out of the house. I feel like I live in a bubble within my home. I stay busy with crocheting, reading, playing Elvenar on the computer and watching our favorite tv show called Tournament of Champions (5th season!). If you like cooking, that show is a MUST see! It’s on Food Network!

I’m also learning something new. We are going SOLAR! I am very excited about this. We will never be without power again which is a relief because, you know…. life support equipment! There are so many details with getting Solar panels and a battery backup. It’s been a huge learning process… There are so many things involved such as homeowners insurance, power company changes, solar tax credit, and so much more. We’re still in the planning stages but it’s going to happen!

I hope you are doing well. *hugs*

Would I do it? If you could be someone else for a day, who would you be, and why?

Daily writing prompt

If you could be someone else for a day, who would you be, and why?

View all responses

Here’s a subject that I have often thought about the response to. If I could be someone else for the day, who would I be, and why?

This is a tough one for probably a lot of people. However, for me, I wouldn’t want to experience anyone else’s life for a day. Why? Because I know I would always have to come back to be the person I am today. Don’t get me wrong. I have a great life, full of love and has been full of adventure. But, the challenge of becoming a healthy human being with no medical problems for ONLY ONE DAY would be difficult to experience knowing that I would have to revert back to who I am today.

I had this conversation with my sister last year. She was surprised by my answer and told me that she would trade bodies with me and asked me if a year would be long enough to be able to experience life as a healthy human being. Of course, I said NO! I mean it’s my sister and I would NEVER want her to experience my life the way it is today. It’s the thought that she would be willing to pause her life for a year for me made me want to cry.

So, no, I don’t want to be anyone other than myself. Now, if someone wants to experience my life for a day… just to see what it’s like walking throughout a life like mine.. I’ll be there to cheer you on. It will be an eye-opening, life altering moment for you. You will have a new appreciation for your ability to breathe and can rely on your heart to keep beating.

Life with Home Health – PT & OT.. what a challenge!

In August of this year, 2023, I started my newest adventure. I’ve entered a new phase of my life since I started using the Trilogy machine 24/7. I went from using 8LPM of oxygen 24/7, with the occasional daytime need of Bipap support, to needing 10LPM of oxygen and the use of the Trilogy machine around the clock. That was within a 2 month period of time. In hopes of stabilizing my downward trend of my health and to regain some endurance, my doctor and I decided that in-home physical and occupational therapy through Home Health was in order. Along with the two therapies, a nurse comes to my house to check my vitals and to see if I need help with supplies or to do my lab work. 

Getting started with in-home therapy was a scheduling mess. The doctor contacted a home health agency and sent them the orders for the therapies & the nurse care. The home health agency contacted me immediately (while I was sitting in the doctor’s office!) to start the ball rolling with scheduling an in-home evaluation. 

The Home Health representative came to my house for their evaluation and told me what my insurance will cover. He stated that a Physical Therapist & Occupational Therapist, a Nurse & a Social Worker would be calling for their first visit evaluations. Each person went over my health issues, took my vitals and what my goals were for each therapies. By the last person, I was getting tired of repeating myself because the PT and the OT were from different companies since the agency didn’t have both PT and OT available. 

I will admit that I was really overwhelmed and clueless as to what to expect. The Social Worker never called me. I had to track him down through the home health agency to make an appointment. (more about the social worker later). 

I went from just having my weekly oxygen guy showing up at my house to having up to 4 weekly appointments. Normally, I don’t have people in my house (except family and friends). It can add stress. Plus the need to lock my dogs in a room the whole time the therapists are here puts stress my dogs but they’re starting to get used to it. 

For appointments, I have the same therapists. It’s really nice because we can get to know each other.  This allows us to build a trust in knowing where that fine line is between pushing to build endurance and strength to pushing too far and causing pain or soreness. Believe me, we found that line. 

Occupational Therapy works on my upper body strength and the Physical Therapy works on my lower body strength. Because of my insurance, the two therapies cannot overlap each other. OT can’t cover lower body exercises and PT can’t have me doing exercises for upper body. With OT, I have learned that I’m woefully lacking in many areas of upper body strength. My upper body is always tense from struggling to breathe but my hands are strong though! Building strength is good but building my endurance is much more important to me. OT is a slow process due to my respiratory and cardiac issues. 

My Physical Therapy focuses on my legs and hip strength. This is vital for helping me to lift myself off the floor easier and build a stable balance. I have pretty good balance while walking. It’s necessary in order to walk around my house with a long oxygen tubing on the floor. Plus, the tubing from the Trilogy and my oxygen can get tangled or caught on corners a lot. Have to watch out for my little Willow who likes to circle my legs as I prepare her dinner. I do what I can for myself but it’s still the shower that I need help with but therapy has made a small difference in my endurance that’s noticeable already.

In each therapy, there are rest breaks. When I start to have shortness of breath, I sit down and take my oxygen saturation measurement & heart rate with a pulse oximeter. The therapists lets me tell them when I’m ready to go ahead with more therapy exercises. I know my body, I know my heart rate and how well I’m breathing and for them not to push me is a HUGE plus in their favor. However, I don’t take advantage of them. I really want therapy to work. I’ve learned a lot about myself. How I seem to hold my breath while I do certain exercises such as the Stand Up and Sit Down on repeat. Granted, it’s NOT easy to time my breathing using a Trilogy that assists my breathing on a semi-timed function. Explaining this to each therapist was super fun. 😉

I will keep you updated as I venture more into my PT & OT experience. I really like all three ladies. The RN is super helpful but she’s only needing to come to my house twice a month since I’m pretty stable and I really am in tune with what’s going on with my health. Besides, she’s just a text message away and I REALLY like that because it gives K and me a peace of mind.

If you have any questions, let me know! Hope you are enjoying the cooler weather! Don’t forget to subscribe to my blog if you are a new visitor.

UPDATE: Meeting Challenges Head On…

I’ve been wanting to talk about this subject for a time now. It’s made me feel quite overwhelmed. Life, lately, especially the past few weeks has felt chaotic. I got the results of my Annual Physical labwork back… my creatinine was off, my TSH was off and even my Iron was off. What does that mean? Adjust medication and retest the labwork. Ugh. 

I had a good talk with my doctors and the subject of Home Health (Physical & Occupational Therapy as well as Social Worker) was brought up again. This time, we were interested in getting the information to see what I qualify for and also to plan for the future. My health will decline more and it’s better to be prepared. It NEVER hurts to find out what’s available so that you can plan for the future. Better to be prepared than to be in the position where you need it immediately and not know what to do. 

Trust me. Since this is all new to K and me, getting all this information so fast is a bit overwhelming and slightly stressful. However, I’m handling it the best I can and I’m trying my best to stay optimistic throughout this new phase of my health adventure. When I feel down, I think of the roadtrip we’re going on soon to see my family. They always are a joy to see. 

One sister is throwing me a birthday party and the other took my rubber chicken, Birdee, to Cozumel! So how can I NOT be happy when I have a great support system. K has done all he can to help me cope with the changes in my health. He knows my life is hard but we do/change things to try to make it easier.

Taking a shower to wash my hair is ridiculously hard for me to do. If you are familiar with a Bipap and it’s mask that needs to be worn to use the machine, then you know that to wear the mask, you need the head gear to hold it in place. It’s the same thing to use a Trilogy machine. For me, I can’t take a shower without using my Trilogy machine. I want to stay as independent for as long as I can, so I invented a mouthpiece to use by putting together odds and ends of medical accessories. LOL! Even using this, it’s still hard because, to wash my hair, it uses a lot of upper body strength that I’m losing due to my cardiac and respiratory conditions. But, at least the head gear isn’t in my way of washing my hair with my new fandangle apparatus! Crazy awesome, isn’t it???

I don’t shower unless K is home in case he needs to help me out. If I’m in the shower, he stays in the house so he can hear me shout out if I need him. When the water is turned off, he asks if I’m ok. He’ll even help me get dried off or dressed if I need extra help but I’d rather do it myself to give me a sense of independence. The first couple of times I needed him were scary because I started turning bluish gray. Not sure who was more nervous about that between K and myself. I’m constantly thinking of different ways to do things that are hard for me. I have a 10ft hose that I use with my Trilogy. The DME only gave me a 6ft hose which was ridiculous because how was I to be able to park my Trilogy in my kitchen and fix dinner while just using 6 feet of hose to move around? So I got a 10ft hose from Amazon and presto, I became mobile! Much better.

So this week has been incredibly challenging for me. I’ve been so stressed out with people coming over doing evaluations and setting up appointments. I’m not used to so many people coming into my home. Every time someone comes over, I have to lock my pups in a room which of course makes me short of breath. But I’m going to give this Physical/Occupational therapy a try in hopes they can help increase my endurance and maintain, or even improve, the level of my health. Tomorrow, Saturday, is the first day this week that I don’t have to get up early or expect anyone to show up. This girl is sleeping in! I’m just so tired. *snore* Oh hey! Where was I? Oh, yeah….

Eventually, I’ll need care that’s not covered by insurance. It’s better to research that now than to be uninformed when that time comes. 

Not to worry though, I am resilient and I’m excited to see my family and I wonder who will be taking Birdee on her next World Traveler Adventure. One person has volunteered already but I don’t know when that vacation will be. So, I’ll let you know when I know! All I know is that my sister said she got some strange looks from a few people but she didn’t care because she was doing this for me. Awww…. *BIG HEART EMOJIS*

I hope all is well in your life. =o) Just to give you a heads up, I’m turning my blog into a ebook that will be in chronological order!! How exciting is that? I want it to be done with it by the holidays. YAY! *hugs* to you all!

A Bit of FUN!

It’s been a fun week of adventuring for my awesome rubber chicken! I’ve decided to change her title to a WORLD TRAVELER MASCOT. Birdee is my newest rubber chicken because, may he rest in peace, Klondike passed away from a broken neck. However, while he was with us, he sure had fun in France, Germany and a few other locations in the USA!

Since I can no longer travel like I use to, people are lining up to take Birdee on her next adventure! Lucky bird! Honestly, I’m excited about it as much as Birdee is! I have to finish crocheting her new backpack to get it ready for her next adventure. I’ll have to “renew” her passport too. *wink*

Over the past week, she had her first international flight to Cozumel! You’re probably wondering why I have a rubber chicken, that acts as a “Flat Stanley,” if you will. It makes me feel like I’m experiencing the vacation in a small way. It just works well for me… trust me. It also gives me great joy to see all the pictures coming in from Birdee’s vacation adventure. My husband bought my first rubber chicken YEARS ago and I named it Poke. So, it all started with Poke and the roadtrip mascot was born.

This time, my sister volunteered to take Birdee to Cozumel. She’s not shy about carrying a rubber chicken around with her in public. Sometimes, she stuffs my rubber chicken in a backpack to carry around but that’s ok! What an awesome sister, right?? BIG *HEARTS* to her! Especially since every time Birdee is squeezed, she screams REALLY LOUDLY. lol!

Birdee experienced some daring and exciting things: Flying in an airplane, boating, scuba diving and then got seasick. Poor Birdee. I hope she feels better soon! Below is a slide show of the pictures of her big adventure. I hope you like them and put a big smile on your face as it did mine.

Next post will I will be updating you on what’s going on with me health wise. It’s been a little overwhelming. So that’s why I haven’t posted about it yet. However, I think I’m ready to discuss it now. *big hugs* I hope you are dealing with the heat safely. Don’t forget it’s almost time for a Flu Shot! Yay? lol!

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  Birdee has arrived in Cozumel! Birdee has just arrived in Cozumel and seen the ocean and beach! She is my World Traveler Mascot. Thanks Birdee for going places I can not go!

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  Birdee looks a little anxious trying on the scuba gear that looks way too big for her.

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  The Captain allow Birdee to steer the boat! Whoa what a cool captain!

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  My sister diving with Birdee! Wow what an adventure!!!

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  Birdee is totally amazed with all the coral and look at that huge lobster!!

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  Birdee said “squawk” (that’s HELLO in Birdee speak!) to the big turtle!

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  Birdee really close to that shark. Now what????

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  I think Birdee was trying to float away from the shark who’s in the background.

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  Uh oh! Birdee might have had too much fun. She sure got seasick… Poor thing.

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  Ohmygoodness! Birdee!! You naughty chicken! Eating some of the birthday girl’s cake. I’m sure she was just trying to celebrate with her.

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  K and my tradition for our anniversary and my birthday. My sister did this for me because I can’t get to a beach this year. Love her so much!

Vacation without me

This is not the first time K has been on vacation without me. He once went with my family to Colorado for a week. That was back before we had cellphones. He had to call me on a payphone when they had stopped to camp. It was his first actual camping experience with a tent out in nature. He was a city boy that went camping. It was a true experience for him. He always says it’s not the same going somewhere without me because he wants to share the experience with me. He’s truly a sweetheart.

Last week, he went to see his extended family in Ohio. To make sure he went, it was an amazing feat of my family doing what they do when they’re called to action. The closer the departure date came to fly to Ohio, the more nervous K was about leaving me at home. He was tempted to stay home. So, I started planning.

As with any caregiver (or is it caretaker?), they need time to rest the emotions and rest the body from having to spend all their extra time (at least with us) taking care of the needs of their loved one (or friend, whatever it may be). Stress from being a caregiver (sorry, I’m going with ‘caregiver’. It just makes better sense to me.), builds and builds. If they don’t have an outlet or a place or an activity for just themselves to relieve stress, depression can set in and even still, it could happen. For you caregivers, I salute you for all you do to take care of the person you love and who needs you. Please try to take time for yourself in what’s called self-care and / or counseling.

I knew the dates that K was going to be gone. I had to get people to cover those dates or at least most of them. I realized if I could get most of the days that someone one was here checking on me, the better K would feel and the more likely he would go and enjoy his time in Ohio. So, I was able to get my BFF (M) to come over the next day after K left and she brought her son with her. We talked for 3 hours! It was fantastic! She asked what I needed help with and I asked her to please take out the trash and the wheel the trash bins to the curb. It was great because I didn’t think we would get them out before the trash people would come. GREAT JOB M & J!

M (my BFF) would text me nearly daily. She knew that my older sister was coming down too. My older sister is a take charge person and got a lot done. She fed the goldfish in our pond outside, made K and I sugar cookies (a batch and a half!), & made sure I was doing well. On Sunday, my younger sister came down who also helped a LOT. So while my older sister was still here, my younger sister held my Trilogy face mask to my face so that my older sister could cut my hair & I wouldn’t get tired from holding the mask. Talking about sisterly love and team work! Way to go SISSIES!

My older sister went home and my younger sister stayed. She and I binge-watch the first 2 seasons of Jack Ryan on AmazonPrime. I couldn’t believe she’d not heard of it before. *shock* FYI: Season 4 of Jack Ryan has been released! YAY! However, K doesn’t like binge-watching anything. He’s a savor-the-moment type person. Ugh! I’m so impatient! Though, there’s only 2 episodes out right now. We also made her favorite Chocolate Oatmeal Cookies to take home. She did all the hard work… including the constant stirring!

All throughout the time K was in Ohio, he would text and FaceTime me. I could tell he was having FUN. He was eating better and smiling more. He knew family & my friend were taking care of me. He even FaceTimed me on the 4th of July so I could watch the parade with him. Awww… it was EPIC!

I did try to wash my hair on Tuesday before my sister went home but I needed her help getting out of the shower again which was discouraging to me. I’m slowly gaining weight. K & I are frustrated because I have to rest more which means I don’t need as many calories. I have a sweet tooth. Now I have to be more careful to eat good food and less sweets. I’m internally crying over that. lol!

So, we’ll be discussing the weight gain with the doctors this month. In the next blog I post, I will discuss and show you what I’ve put together so that I can use my trilogy while showering. My original apparatus that I’ve pieced together works the best but I’m still tinkering with other ideas! I’ve even enlisted the help of my sisters to help me think of different ways to wash my hair. I want to be able to do it myself but if I need help with the hair washing, I want it to be easy for K to help. I will be trying a different idea tomorrow that involves K’s help. Wish us luck! I will not be defeated! =o)

The Next Step

My life has changed since I returned home from vacation. It has been very challenging. It crept up on me. I don’t think I did anything wrong to make everything change. I knew this was coming but I didn’t think it would be so abrupt.

I went from sleeping and napping with my Bipap, to needing my Bipap to drive down to South Padre where we vacationed. While on vacation, I used my Bipap when I made dinner. When I saw a Neuromuscular doctor during the Summer, the doctor suggested a Trilogy machine. At the time, I didn’t think I was ready for that but when I returned home from vacation, I was thinking differently.

I started out using a spare Bipap machine in our family room when I was sitting to watch tv during awake time. I would take it off to make dinner and clean the kitchen. While in the kitchen, I would have trouble breathing. I got short of breath and had to take breaks with my Bipap on. I was exhausted when I finished cooking and cleaning up dinner dishes. I really started to struggle as the next couple of months went by. It wasn’t until I was in the bathroom and had to call for my husband to come help me out of the shower.

Having to need K to help me out of the shower was scary for both of us. My skin was turning grayish blue and I was desperate to get back to my Bipap machine. I had my oxygen at 10LPM and that still wasn’t enough. I went from 8LPM to 10LPM within 2 months time.

Because of this rapid change in my breathing, I decided to go ahead and get the ball rolling on getting me a Trilogy machine. I have it now. It’s a little awkward having to need to wear the mask all the time. Since the respiratory tech didn’t have the hose and mask that I wanted, I use the same mask & 10ft hose as the ones I used with my Bipap. The ten foot hose is handy when I want to park my Trilogy-on-wheels in a central location of my kitchen. This allows me to walk all over the place in the kitchen, dining room and into the laundry room. It’s weird wearing my Bipap mask all the time and being connected to a machine on a IV-like pole that has wheels. I’m just glad that most of my house has wood and tile flooring. Rolling it on a rug take more effort and tires me.

So, now I get to look glamorous! I pretend I’m acting as if I’m doing a Mars exploration experiment. Earth is Mars! The Trilogy is part of my space suit equipment! haha!

Using this machine is not difficult. It’s just requires me to figure out how to do things differently. Now I’m having to drag around a pole and try hard not to get my canula twisted around it or myself wrapped up in tubing. The pole is pretty darn sturdy but having the oxygen tubing attached to the machine wasn’t working for me. So, I moved it back to my mask’s oxygen bleed-in tube. You can see it in the picture shown below.

My biggest hurdle right now is trying to figure out how to wash my hair. I can’t be in the shower without the trilogy on and the trilogy can’t get moisture inside it. I can’t shower with just oxygen on anymore. The last time I tried it was a disaster. Ugh! I got as far as washing my hair and I had to get out. *cue K running to help me*

I would like to hear from the people who use a Trilogy full time. How do you manage to wash your hair if you can’t take this mask off? If I can’t figure it out, I’m going to have to ask for help from K and I don’t want to add one more thing to his growing list of things to do. I want to be as independent as possible.

I had my first outing with my trilogy machine. We now have a lot of stuff hanging off my wheelchair. Two oxygen portables hang off the handle bars and the trilogy sits in my lap because we haven’t figured out a better way to transport it without K having to carry it. Leaving the house wearing it was awkward. I internally gave myself a pep talk once we exited our vehicle. People stare. I know that and it’s fine with me. I am still in that stage where I’m accepting this new phase of my life. I’m doing ok with it. It makes my life a little easier in the ways that I need it to. So, I’m thankful.

What matters is that I’m still alive and I can still smile. It’s hard to eat with this on and I have to use a straw to drink from a cup. But, hey! I’m still alive!!!! Hooray!


Trilogy Evo Machine

My new life’s adventure.

We went on vacation!!! FINALLY!

Prepare yourself for a LONG read with pictures. 😉

It all began the day before we left for South Padre. You see, we have a cute waterfall pond that’s filled about 8 goldfish. On that day, the pond pump decided to quit working. So, off to Lowe’s K went. It was a good thing that the pump died because K decided to check out the Inverters that Lowe’s had available. When he found them, he FaceTimed me to check the voltage & amps/watts my Bipap runs on. He bought one so that I could use my bipap while in the van!   

Our vacation was pretty adventurous from the very beginning. It first started with my oxygen reservoir we keep in our van for car rides. It decided to start leaking oxygen when we got there. We called Life Support-Dallas, who services my oxygen needs, and K and Eddie (Life Support) walked through through on FaceTime trying to fix it. Well, K did everything right but when he poured hot water on the chunk of ice that was around the leak, the hose snapped off. All the liquid oxygen bled out. See what happened! (Large video 30mb) https://livingono2forlife.files.wordpress.com/2022/10/img_2536.mp4

Naturally we scrambled to calculate how much oxygen I had left and how many refills my portables can use from one of my 2 100lb reservoirs in the condo before we had to go home. Yikes. That was interesting. One of my tall reservoirs can fill both portables 12 times. Then we worried about the hurricane and which direction it was going to go. We made the decision to leave early if it came our way. Plus, we decided, when both reservoirs got down to 1/4 full, we would start for home since we no longer had my van reservoir to drive home on. 

The next day, I asked K if he wanted me to tie a string around his glasses with a little duct tape (I never leave home without duct tape!). He said no because he didn’t want to look like a hill billy. Lol! 30 minutes later, he came back all upset because he lost his glasses in the Gulf. Men and their stubbornness… Am I right ? Lol! Ok so we scrambled to find an optometrist in the area who would see him the next day (Sunday). The doctor turned out to be super nice. We got a prescription and emailed it to K’s eye doctor where we get our glasses made. His glasses are super complex. All the bells and whistles on it. *rolling my eyes* So, his glasses are in the works while we wereon vacation. YAY!

Next, K get stung by a Blue Button jelly fish. My Go-Bag to the rescue again with Medical supplies this time. He’s fine. No real damage to report on that other than slight swelling. Wheww! I was like, Dude… don’t even say… “What could happen next.” Seriously, with his vacation track record.. I was fearing the worst! Well, the drama calmed down and we had a good time. He went to the beach every day and walked the dogs a bunch. Willow became our beach dog who chased the little hermit crabs and seagulls. Neither dog wanted anything to do with the water which was ok with me.

The water heater in the condo was not functioning properly. We had lukewarm showers and I had to heat water to hand wash the dishes (no diswasher). The night K lost his glasses in the Gulf, he went down with a flashlight to look for them along the water and found a $500 boombox bluetooth speaker system floating in the water! Wow! He was all excited. I posted information on Facebook in the SouthPadre Concierge and no one claimed it. K brought it home with us.

We went to the Fire Station to check out the Mobi-chairs (wheelchair for the beach that has large fat tires!) that we could’ve checked out for free to help me get down to the beach. However, we tried my wheelchair down the boardwalk to the sand, parked it at the end, and I could walk the rest of the way slowly. So, we didn’t need the Mobi-chair. It’s nice to have one available for free if I needed one though. The fire fighters were super nice and said they had oxygen if I needed it. I don’t think they realize just how much oxygen I use even though we told them 8lpm 24/7. *shrug* =o)

We went down to the Jetties where the shipping channel is. We watched the surfers catch a few of the higher waves that the hurricane had caused. We had a few red flag days there at the end for the water danger. That is where K went for a walk down the rocks of the jetty and found a turtle stuck head down between two massive rocks. Poor thing. We tried to let people know who where there but they all said not to touch it.. talk of big fines.. blah blah blah. So, he came and told me and we looked up the Sea Turtle Rescue place that we visited the day before and got them to come out to get the turtle out.

K got to name him Jagger (after Mick Jagger, of course!). They wouldn’t let him name him after Mike Modano (Dallas Stars!). We went back a few days later and checked on Jagger. He was doing well. Hope to watch his release on Facebook when the time comes. Every Friday and Saturday night we would go out on our patio when it got dark and a restaurant would set off fireworks that lasted about 5 mins. It was great! 

We had a great time. I felt a little weird driving with my Bipap on. I’m just glad that K had to go to Lowe’s before we left for vacation because he found the inverter I could use to plug in my Bipap and use in the van. I don’t think I would have made it there and back without the use of my Bipap during the drive. My breathing has become very challenging now. I use a Bipap almost all day and night now. 

[Health Update] I am going to contact my Sleep Lab doctor to get the ball rolling on getting me the more advanced machine called Trilogy. It can run on batteries or be plugged in and it’s mobile. I could use it anywhere in the house or in the car. It’s time to take that next step. K is slowly adjusting to my new health limitations. I’m proud of him because I know this isn’t easy for him at all. I just had my Telehealth visit with my Pulmonary Hypertension doctor. Everything we are doing is right. It’s just with age and progression of my limited ability to breathe, I’m happy that my heart is holding up as well as it has been. My lung volume has dropped. So, using the Bipap as much as I do now will keep the CO2 at a lower level. My next step will be getting an Echocardiogram (for internal blood pressures & chamber sizes) and a CT Scan on my ascending aorta aneurysm. I’m not a surgical candidate for fixing the aneurysm. There’s nothing they can do for it … just monitor it. It’s definitely past their criteria for surgical intervention. I am worried about it but I can’t spend my life worried about it. Just keep living life as much as possible and fill it with fun things to do.

I hope you all are doing well. Here’s a few pictures we took. We went on a painted turtle scavenger hunt!

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Whew! Have I got a lot to unload!

It has been an amazing month off doctor appointment after doctor appointment after… well you get it. We were busy. After the cardiologist appointments in May, I went back to my PCP (primary care physician) to update him.  We decided against the Prevnar shot again. YAY! However, I did tell him that I have a few more appointments lined up. 

Before we went to another doctor appointment, we went to see my FAMILY!!! K & my older sister pulled off a great surprise for me. Awwww…. I know, right? Since I use 8LPM 24/7 and I can only take one of my large liquid reservoirs & my 75lb liquid reservoirs in my van, my sister found me a loaner 10L oxygen concentrator. That way I can use the 10L concentrator set on 6L and my liquid oxygen on 3L. When I’m traveling on vacation, I tend to need more oxygen. I get tired more easily. Bummer, I know. 

While at my sister’s house, I visited with family, my high school best friend-for-life, our family friend (who I consider a sister– she’s just so awesome!), and there was a niece birthday party (her little friends included!). Not only that… K cooked an awesome dinner for everyone. Uh… YUM! There were homemade crab cakes involved. Delicious! 

I finally got to see my niece’s horse. Our little barrel racer has her own horse now. I’m so proud of her. After all of this and keeping up with our 2 dogs we travel with, we headed home which gave me 2 days to rest before I had another doctor appointment. I was wiped out!

This next doctor is the one who monitors my Bipap use. I explained that it just doesn’t feel like it’s enough for me anymore. We decided to up the pressures because everything on the Bipap memory card looked great. So, that’s what I did and I gotta tell you.. it’s like night and day difference for me. Instead of feeling claustrophobic or not getting enough air, now I feel as if my lungs truly have it much easier to breathe and rest while using my Bipap. 

I also had a PFT. My Pulmonary Function Test result wasn’t great but that was to be expect. I could only do 2 parts of the test because the 3rd part required me to remove my oxygen too long. In fact, the tech had to take my oxygen saturation after I did the first part. It was rough but I powered through it. My lung volume is 16% of a person my age, size and weigh. Thanks Scoliosis! Grrr… 😉

The most exciting doctor we went to see for the first time is a Neuromuscular doctor who see patients who have MS or paralyzed and need ventilation. This doctor was SO amazing that my husband really likes her. Seriously, that’s a huge deal! We went to see this doctor for a consult on either my current or future use of a Trilogy. We had a ton of questions but we came up with an idea. I have a spare Bipap machine that I can setup in my family room to use during the day when I feel like I’m struggling to breathe or need a rest. My hope is to stay out of bed more often because that’s where I use my main Bipap when I sleep, power nap or just rest reading. This is what I’m going to try first. If this isn’t enough, we got back to the drawing board and consider a Trilogy.

This is my older Bipap that I have set up for use in my family room. K has really taken to this idea. In fact, he is encouraging me to set it up and use it. He got me a larger side table for it and an extension cord to use so that I can use a 10ft hose with my mask. That way I can sit at my chair to watch TV or play on my computer!

Though it is another decline in my health but we are taking this one amazingly well. K better than I am. I did have a brief cry over it. Then I mentally slapped myself and powered through it. I hope everyone is surviving the heat. It’s been extremely hot out here. So take care and if you HAVE to get out, take water with you. 

I AM HERE!

Doctor appointment day!

Yes, it’s me! I’m still here kicking the can down the road. I’m still alive. Hooray! Go me! This month has been filled with a lot of doctor appointments. K drives me everywhere now. So much has changed for us because of my health. K carries a heavy load of responsibility to care for the both of us and he does A GREAT JOB! 

Years ago we discovered that my ascending aorta was slightly dilated. It’s been a “wait and watch” sort of medical issue. That was back in 2010, give or take a few years. Now, it’s gotten to the point where I had to see a specialist cardiologist who deals with surgical interventions of Aorta Aneurysms. We knew what the doctor was going to say before we even went to the appointment. However, knowing what the doctor will say and actually “hearing” it, puts the fact of knowing that I’m not a surgical candidate and there’s nothing they can do for the aneurysm, has a finality to it. But you know what? I’ve heard that before about a lot of my health issues. No big deal. I can deal with this. Sure, my heart skips a lot and I have an aneurysm… that kinda sound bad, right?… my primary cardiologist feels that my cardiac problems are NOT life-threatening. A big WHEW! I’ll take that answer.

I’ve slowed way down and that’s ok! I can still make dinner and clean the kitchen most nights. So, *thumbs UP* I’m up to 8LPM of oxygen 24/7 and still use my Bipap when I sleep or if I need to power up during the daytime. In fact, I’ll be going to my pulmonologist next and then to a “special” pulmonologist after that. K and I are going to see if I would benefit more using a Trilogy machine instead of just the basic Bipap. (NOTE: if you own one of these machines, there has been a recall for certain ones. Find out more here.) A Trilogy machine is basically one step under a ventilator but one step above a Bipap machine.

Our long vacations are over. I just use too much oxygen and my health is too precarious to risk a long vacation. Our vacations were usually about 10 days which also allowed me time to rest when we got where we were going. It is just too much for me now. However!!!! K surprised me the other day and told me he was secretly arranging a trip up to see my family! I’m so excited! It’s a 3 hour drive and I’m pretty sure I can handle that. We’ll be taking my pups with us. 

Unfortunately, I won’t be able to get my 2nd covid booster shot before we go. I’m a little nervous about that but my family have all received their shots. So, I’ll be as safe as I can be while there. 

It’s getting really stinkin’ hot here. I think we totally bypassed Spring and jumped right into Summer. We’ve already hit 99 degrees. So, let’s stay safe out there. Carry water with you if you have to go outside. Be well! =o)

Coming together in a time of need in our house.

Living On Oxygen for Life

You probably are thinking this post is about the horrible Coronavirus that is going around and maybe it is a little bit. However, that’s not my main focus here because I’m sure we are all needing something else to occupy our minds for a little while. So, while this post may seem a little scary, I truly feel it can be uplifting as well.

Let me start at the beginning and tell you what has happened here in our house. It all started on January 14th, 2020. K and I were getting in the car about to drive off to select the vanity top stone to complete our bathroom renovation. Remember that little pipe leak we had last August 2019? Well, it still hadn’t been finished yet by January. We had turned the whole situation into a bathroom remodel and it prolonged the project. What a chore that was. =o) Anyway, as K got into the driver’s seat of our car, he just suddenly leaned his head on the steering wheel and then started looking around. He told me that something wasn’t right and that he was starting to feel dizzy and the world was spinning. At first, I thought it was just low blood sugar. I encouraged him to go back in the house and eat something. K is a man who will power through any illness. He’s a tough cookie and he doesn’t complain unless something really serious is happening. So, yes, this was scaring me.

K ate a donut and drank a little soda (I know, not the food I was hoping he’d pick to eat) and he decided we could still go to the stone place but I would drive. He did NOT tell me how he felt other than he was “fine.” We were in the stone shop and we picked out the stone that we wanted as our vanity top but I was watching him the whole time. It was apparent that he was NOT “fine.” So many things were going through my head. A lot of self-doubt. How am I going to be able to care for him? How was I going to drive him everywhere? What about his job? Are we going to be financially ok? PLEASE, PLEASE God let him be ok. I was in panic mode. I had not prepared myself to be the caretaker of both of us. Maybe it’s just a short bout of something but I was wrong.

I called my sister right away. She’s a PA and she thought it sounded like he was experiencing Positional Vertigo. She recommended doing some Vertigo excerises (Epley Maneuver) that I looked up on YouTube. Meanwhile I got him an appointment with our family doctor asap who diagnosed him with the same thing as what my sister thought it was and recommended the same home therapy. It didn’t help and he was walking as if he was on a ship at high sea, holding the wall to walk. He would lie on the couch holding his head. Every person is different with Vertigo. Some recover quickly. Some have it for a long time. The doctor, at first, thought he would be better in a week or two. He wasn’t. Paperwork had to be filled out to get him a leave from work and for the short term disability that we had luckily purchased (HIGHLY RECOMMEND!).

So after nearly a couple of weeks, he was referred to a Physical Therapist. I was still driving him around. I was exhausted. I had done more things in that time period physically than I had in a long time. However, he was starting to show signs of improvement.

He was home for six months from Vertigo. In a twisted way, it was somewhat of a blessing. With Covid just ramping up, he was home with me. It was the longest time we’ve ever spent together and it taught me a lot of patience and strength. He has been my strength when I needed it but I found that I could rise to the challenge of the occasion when called upon. It was stressful and so not easy but we learned a lot about our strength together as a team.

He’s doing so much better now for which I’m vastly thankful for. I kept thinking in my mind that it was suppose to only be my body that falls apart. However, everyone gets old and bodies wear down over time. I just wasn’t ready for his to trip me up. It was shocking. Life happens. God was watching out for us.

A New Adventure Awaits!

Yesterday, I spent a good amount of time at the beauty salon. We’re talking about three whole hours. It’s not my stylists fault we spent so much time doing my hair. It’s my HAIR’s fault. Ok we gabbed a lot but I was also born with thick hair which happens to be long and now it’s getting gray. *gasp!* I know… Me? Gray hair?? Inconceivable! It’s ok. Having gray hair means that I made it to 51!!! Soon to be 52!!! Woohoo! Go me! Rock that GRAY hair.

Ok so maybe now you’re thinking that if I’m cool with gray hair, then WHY am I getting it colored?? My answer is: I’m going to a WEDDING!!! Not just to any wedding, it’s my little sister’s wedding and I’m going to be in pictures. Not only in pictures… my sister wants me to be a bridesmaid!!! My last post shows my dress I’m wearing to the wedding. Whether or not I’m going to be a bridesmaid will depend on my energy level. My sis wants me to be one but she is leaving it up to me and how I feel at the time. Right now.. I’m like.. heck yeah.. sign me up! But it’s smart to be cautious.

So, I’m going on another adventure and yes I will be taking my new rubber chicken. My previous chicken passed away. His neck broke. So so sad. *sigh* Klondike was so cool. Remember? He went to Germany, France, and so many more places. Now, though, I have a new one, slightly smaller but still packed with a lovely scream. All I have to is squeeze his tummy and Birdee will scream like nothing you’ve ever heard. haha! I can’t wait for my family to meet Birdee. I know it sounds weird and maybe a bit juvenile but he’s got a passport and a backpack and he’s willing to travel. He’s one cool chick… er.. dude chick.

What was super nice about yesterday was that before K left for work and before I woke up in the morning, he had cleaned and brought in my MacGyver’d portable oxygen cart (the one I made that carries two portables). He also prepped my vehicle with a big pillow that I drive on (I’m short.) and he filled up the tank with gas. He even made sure I had tip money. Ohmygosh! So unexpected. I didn’t ask him to do any of this. He even met me at the salon about an hour before my hair was finished and when he was done working to make sure I was ok. He also refilled one of my liquid oxygen portables while he waited. He didn’t want me to run out of oxygen.

He knows that my breathing has gotten much worse. So he’s trying to make everything easier and more enjoyable for me. He knows how much I want to go to this wedding. He’s a blessing to me. My next item on my wedding prep to-do list is GET MY NAILS done!!! I have to space all these events out because I get tired from them so easily. It takes longer to regain my energy. But by the time I’m ready for the wedding.. I’ll look FABULOUS!! *cheesy smile*

After the wedding, when I come home, I’m scheduled for medical tests. My 6-minute walk, labs & echo didn’t look great which means I get to have a Right Heart Cath and a CT Scan sometime next month. The doctor already suggested getting a shower chair. YAY more shopping! haha!

Life is always interesting here. I hope everyone is well and being safe. Love to you all.

Life Has Changed!

An opportunity has come along and I’m grabbing it with all I’ve got to give myself a chance at some fun and excitement.

Everyone knows how bad Covid has been. I’ve been stuck in my house for over a year and I’m finally starting to get out in the public. Having Pulmonary Hypertension along with other breathing and heart issues, K and I have taken this Covid19 seriously. That means, I didn’t leave my house unless it was for my monthly labs. Even at the height of Covid19 lockdown, my doctors had me only going every other month for labs instead of monthly. Naturally, that’s when my lab results started to look concerning. So back to every month I went. I finally got smart and made appointments for the lab work. Less waiting around.

Now I have an exciting event to go to this year. My little sister is getting married!!! She wanted me to be the Matron-of-Honor but I had to pass the torch of to another one of our sisters. The stress of being involved in the wedding party would be too much for my health. As sad as this makes us, I decided to go all out and dress up and have fun with attending. It will require some traveling which means our dogs will be going with us! Roadtrip!!!

K took me dress shopping. He was great! We had me in my wheelchair looking for the perfect dress. Let me tell you… it took a while. Since I have scoliosis, dresses don’t normally fit very well. After I found the dress that I liked, we decided to take it to a place who specializes in altering formal wear. The picture above is the dress before it has been completely altered. It’s a little long and it needs taken in on my left side at the strap and bodice. Darn that scoliosis!

I’ve never done this with any of my clothes before. However, now that I’ve experienced how easy it is, I’m asking myself why I haven’t done this before???

I hope that everyone is doing well. I pray that everyone is staying active and as healthy as you possibly can be. *hugs*

Adapt and Overcome.

Living On Oxygen for Life

Adapt and Overcome!

How creative do you get when you are faced with a new challenge in your life? A year ago, my husband (K), bought us a new clothes washer and dryer. We wanted the largest load capacity we could afford. We didn’t realize how large the washing machine would actually be. Or should I say… how deep the machine would be.

I’m actually 5’1” and to reach inside the machine to unload or to rebalance a load for the spin cycle is virtually impossible. So I had to come up with a new way of doing laundry. I found what I needed in my kitchen. In fact, I already use them to get things down from the upper cabinet. I just love Club Crackers but K always stores the on the top shelf.

Kitchen tongs are incredibly versatile. It’s a perfect tool to use for extending your reach inside both the clothes washer and dryer. Just think of me as a little MacGyver! lol! Stay well and stay home to be safe. *hugs*

When unexpected things happen…

Living On Oxygen for Life

I know… I know… It’s been since January of this year since I added a post to my blog. SOoooo much has happened since then. K had surgery on his eyes…. AGAIN, and his momma passed away which had hit us HARD to name a few. I even started a new heart medicine. It’s been a year full of challenges so far but we are taking each challenge head on. Battling them like you would expect us to do. Go team!

Yesterday, (Tuesday) brought us a new challenge or should I say frustration. K and I had a doctor appointment in Dallas that had us getting up at 5:45 IN THE MORNiNG.. Yeah, I know.. Me getting up that early is unheard of. I kid you not. I tend to get insomnia a lot, especially when I have somewhere important to go the next day. So, I don’t get much sleep the night before I have to wake up. K is always telling me, “Go to sleep Chris.” Ugh! I wish I could.

Well, I got up on time. I know, I’m very impressed with myself. I’m even ready to leave on time. WHAT???? Yeah… I’m shocked too. K filled both of my liquid portables for me AND took care of our dogs and cat for me. Awww. I know, right? He’s soooo sweet.

In my van, I have a 75lb liquid oxygen reservoir which was filled on the day before at 1:30pm (Monday) and K went out to the garage to strap the tank in. He also took one of my liquid portables out to my van so I’m only having to carry one portable when I’m ready to leave. He’s thoughtful like that. Well, he came back inside and told me my van reservoir was bone dry. He even led me out to the garage and pulled it out of my van with one hand. I was SO mad. Even though I have 2 portable that would last me 4 1/2 hours on 6LPM which is 2LPM less than my normal 8LPM I usually need, we can not risk driving all the way to Dallas with no backup, my reservoir, which I totally depend on. That means K & I had to cancel my appointment and I just hate doing that.

The inconvenient part of this story is that I called my oxygen provider and told them what happened. They were extremely nice about everything. They agreed with me that the reservoir should not have bled dry within 18 hours of being filled, even if the thing was turned on, which it was (on 6LPM) by no fault of ours. They told me they would bring me a replacement today (Tuesday) because I told them that I missed a doctor appointment this morning in Dallas. They even apologized but they didn’t show up today and I ended up waiting ALL day for them and I was exhausted even with getting a short nap while K waited for the phone call that they were support to make to let us know they were on their way.

So that was my Tuesday. They better show up tomorrow (Wednesday). Grrr…. =o) I just hope I don’t have to wait around all day again. You can count on me calling them first thing in the morning. Being on oxygen 24/7 and not able to function without it makes it a really scary to have things break on me. Thankfully, K is usually with me when we leave the house.

My next post will be good news! YAY! I hope everyone is having a great Summer. It’s scorching hot here (99 – 100 degrees this week) and I’ll be indoors a lot! Have a great day!!!! OH! And Willow, my puppy is just ADORABLE and I love her!! (and Rocco too!)